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Design of a District-level Pilot Project Model for Prevention of Chronic Wounds & Lymphedema in Settings With Limited Resources
Abstract: Chronic wounds and lymphedema are often secondary complications of chronic diseases. Chronic wounds and lymphedema cut across diseases, settings, and borders especially in settings with limited resources, and present an opportunity to implement an integrated approach to prevention and care. The following article describes key elements in the design and development of pilot projects based on the principles of the World Health Organization’s (WHO) Innovative Care for Chronic Conditions model. The pilot projects will advance the efforts of World Alliance for Wound and Lymphedema Care (WAWLC) to aid health systems in building capacity for effective wound and lymphedema care.
Address correspondence to: Erik Post, MD Royal Tropical Institute Wibautstraat 137-k 1097 DN Amsterdam The Netherlands Email: e.post@kit.nl
Background
In 2007 the first meeting was held for what is now called the World Alliance for Wound and Lymphedema Care (WAWLC). Several organizations were part of this initiative, notably the Association for the Advancement of Wound Care (AAWC), Health Volunteers Overseas (HVO), the Canadian Association for Wound Care (CAWC), the Buruli Ulcer Initiative, Handicap International, Medecins Sans Frontieres, Netherlands Leprosy Relief, The University Hospital of Geneva, World Health Organization (WHO) representatives from the Buruli Ulcer and Filariasis Programs, and some persons on individual title. A White Paper was commissioned (finalized in 2009) on current best practice in wound care with a perspective on wound care in settings with limited resources. The anticipated publication date for this document is sometime in 2010. Since the inception of WAWLC, several field visits were made to Ghana, Uganda, Sierra Leone, and Cameroon to document current practices at the field level, to network, and to transfer knowledge (see the Treadwell & Keast article in this issue). Since 2007 several other societies and professional organizations have joined the initiative. During the most recent WAWLC meeting in October 2009, more than 40 participants from WHO and various countries were present, including 11 medical societies, 2 industry observers, and several non-governmental organizations (NGOs). This group defined the mission of the WAWLC as “Working in partnership with communities worldwide to advance sustainable prevention and care of wounds and lymphedema in settings with limited resources.” In 2009, the WAWLC decided that in order to promote this mission further it would be useful to facilitate pilot projects, which would be based on best practices outlined in the White Paper while focusing on the five principles for wound care (see the Macdonald & Asiedu article in this issue) and the application of minimum standards. This manuscript outlines the basic process that must be undertaken in order to design and implement an effective and sustainable program using an integrated approach at the district level. Examples of similar global initiatives and links to the evidence for their effectiveness may be found at www.filariasis.org, www.pmnch.org, as well as www.who.int/en.
Pilot Project Design and Essential Elements for Implementation
The long-term goal of the pilot project is to design and develop a model for healthcare systems in settings with limited resources that organize appropriate and low-cost interventions and technology at all levels of the health system for the prevention and care of chronic wounds and lymphedema. The specific objective is to design and develop a model at the district level within a 2-year timeframe. Presently, two projects are being developed—one in Ghana and one in Vietnam. These projects are independently funded but related to the efforts of WAWLC through the working groups on Program Development and Monitoring, Evaluation, and Research. Framework. To design projects or programs, it is appropriate to use the framework described in the WHO Report on Innovative Care for Chronic Conditions (ICCC).1 In this framework, better outcomes for chronic conditions are seen as the result of a partnership between community actors and the healthcare team with a focus on patients and their families. Prerequisite is a positive and supportive policy environment, one that supports the provision of the necessary skills, knowledge, and the ability to produce positive health outcomes. This approach is considered crucial in preventing and healing chronic wounds, which can only be successful if the health system provides adequate care with family support for the patient in conjunction with a sufficient level of patient self-management. Self-management support appears to be essential as demonstrated by the literature on the effects of self-care groups (SCG) in patients with neuropathic foot ulcers.2–5 It is also encouraging that SCGs appear to have a beneficial effect on self-efficacy.6,7 Design and development. To pilot such a model, technical guidelines must be developed for peripheral staff and project management that conform to local circumstances and resources.8 Healthcare systems, resources (human, economic, technological), healthcare worker capacities, cultural and community circumstances, and health seeking behaviors differ from country to country. Therefore, technical recommendations must be developed in close collaboration with local stakeholders and communities. Drafting generic guidelines, currently being formulated by the WAWLC Interventions and Research Working Group, will help in developing such guidelines. It is envisaged that additional pilot projects will be carried out in other countries in which these standard “model” guidelines would be modified to conform to local circumstances and then implemented. Following the use and revision of the guidelines in several countries, it is expected that their effectiveness will be demonstrated and will lead to WHO endorsement. The following essential activities must be conducted in order to achieve this long-term objective: 1. Global, technical experts with experience in settings with limited resources prepare pilot guidelines. 2. Conduct a thorough situation analysis of the pilot project district: • Assess the epidemiology (through a review of available data, clinic visits, interviews with staff and communities, and the use of the statistical capture-recapture method). An epidemiological assessment aims to determine the prevalence and incidence of chronic wounds and lymphedema. Various methods can be employed and it is recommended to use at least two methods for the purpose of triangulation. Examples include: A. An inventory of chronic wounds in clinic registers from public healthcare facilities, referral health facilities,8 and private clinics. The burden imposed by these conditions may be estimated by calculating the number of individuals who present with morbidity from wounds and lymphedema as a percentage of the total clinic caseload. B. Conducting semi-structured interviews with healthcare workers, pharmacy shopkeepers, traditional healers, and community leaders to get an impression of the burden of wounds and lymphedema. C. Use of the capture-recapture method is a technique that examines the overlap in identification of cases from different data. The total number of cases may be inferred from the size of the overlap. D. Complete an inventory of resources and services (through a review of available data, health facility assessments, and related technology suppliers). This will provide an overview of available health facilities,8 staff capacities, specialized services, and self-management at the community level. The focus of such an inventory should be on the practices used and processes employed in the prevention and care of chronic wounds and lymphedema. E. Complete a stakeholder analysis (through a review of available data, interviews with stakeholders, and a stakeholder meeting). Before engaging in planning, information is needed about which stakeholders are, or could become, active in the field of chronic wound and lymphedema care. Detailed descriptions of how to carry out a stakeholder analysis are available.9 In general, it is important to gain an overview of their capacities, current involvement, interest, influence, and their position towards collaboration and/or coordination of activities. F. Identify gaps in service delivery and capacity (including self-management practices) that must be remedied (through a review of available data and prioritization of activities and interventions).10 Prioritization is best done in a participatory manner by the main stakeholders while keeping in mind minimum standards as recommended by the WAWLC. 3. Strategic and Operational Planning: • Capacity building for wound care (through the development of curriculum, training materials, pocket-guides, and establishment of minimum standards for use in pre-service training, in-service training, continuous professional development, and supportive supervision) • Raising awareness of target groups (through educational meetings, regular dissemination of information, and a small local campaign) • Informing the community (through development and dissemination of information materials for patients and families, information to key community members, and a collaborative effort to involve traditional healers) • Development of monitoring and evaluation tools for use in pre-service and in-service training in monitoring and evaluation (uniform data set of indicators and outcomes) and ongoing data collection and analyses. Indicators should cover these main areas: A. Treatment outcomes B. Service delivery from the point of view of patients and their families C. Service delivery from the point of view of service providers. Treatment outcomes and indicators. The aim of the prevention and care of chronic wounds is clear: preventing wounds, promoting rapid healing, and preventing disability. In keeping with the ICCC framework,5 indicators must account for the level of service provision and the level of patient/family self-management efficacy.11,12 Therefore, the prevention of wounds will depend on several factors: • Adequate patient health education (quality of information and provider communication skills) • Patient (and caregiver) health literacy and understanding of health education information • Patient motivation (self-efficacy) in applying health education principles • Actual level of independence in self-management. In at-risk patients, prevention of wounds and/or acute attacks (episodes of cellulitis) in patients with filarial lymphedema can be measured by documenting the frequency of chronic wound occurrence or acute attacks. Objectives and outcome indicators for the “prevention domain” with neuropathic foot ulcers and filarial lymphedema are shown in Table 1. Service delivery from the perspective of patients and their families. The ability of patients and their families is a critical factor in obtaining good outcomes in the prevention and care of chronic wounds and lymphedema. The healthcare system cannot do everything, and as the ICCC framework acknowledges, collaboration between patients/family and healthcare workers is essential. The effective provision of information and subsequently the levels of provider knowledge, attitude, and practice are issues to explore. The clients’ perceptions of the health services provided by healthcare workers are of equal importance.11–13 Since wound care is an integral part of leprosy programs, the outcomes measures used to assess client perception of these programs could easily be adapted for use in chronic wound and lymphedema care programs (Table 2). An elegant approach to assess community perception of service provision is the use of the “community score card,” whereby the indicators are constructed in participatory fashion with/by the community and healthcare workers.11 For a renewed approach in low resource settings, discovering community views of service provision is relevant to the process of achieving a better fit between supply and demand. Service delivery from the point of view of service providers. The tools mentioned previously for patients and families also contain elements to explore the provider perspective. In the Community Score Card method, an assessment by the community is compared with a self-assessment performed by health providers (Table 3).
Summary
The essential elements of a model pilot project for the prevention and care of chronic wounds and lymphedema in healthcare systems with limited resources has been described (Figure 2). If all elements are implemented successfully, sustainable results can be expected.